Unbearable Hives

Hello everyone. I am new to celiac and have only been on the gluten free diet for about a week. After about one or two days of being gluten free, my hives have gotten probably about ten times worse than they have been over the last year. Before learning about celiac I had an allergy test that showed me to be allergic to wheat but was later told to ignore that. I was told that it had nothing to do with my hives that I have had daily for more than a year. At that time, I stopped wheat for about a week and had the same reaction as I am having now that I have stopped gluten entirely. Is it normal to get worse before you start to get better? I am so miserable with these head to toe hives. I am itching so bad that I scratch myself until I bleed and still don't feel relief! If it is normal to get worse, how long does it usually take to subside??

If these are true hives and antihistamine might help. If it is actually DH, the skin form of celiac, it may take some time to resolve. Folks with DH often will heal faster if they also drop iodized salt from their diet. If it is DH you may have to be very strict with the diet for a bit to avoid all chance of CC as even a small amount will keep the antibodies active. Go with whole foods as much as possible and avoid restaurants for a while if you are not already. Also check your skin care products for wheat or oat ingredients especially since you had a positive allergy test for wheat.

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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45Blood tested and repeatedly negativeDiagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56Twin brother died as a result of autoimmune liver destruction at age 15

It sounds to me like your 'hives' are actually dermatitis herpetiformis, which is a skin condition caused by Celiac. The fact that it resurges when you eat gluten free argues for this. I would spend some time on the DH section of the forum looking for advice and coping methods. I get this rash as well, and have never found anything that helps with the itch.

Perhaps a remedy for a different kind of skin affliction may help?

I am currently suffering from a wicked case of poison sumac on the soft area under my chin and my neck. Fun! So far, the most effective remedy has been this: Dollop of blue Dawn dish soap all over rash, then rub in sea salt. Yes, sea salt. Yes, it hurts. It hurts like a mofo. Let that get dry and crusty (you WILL be suffering, fair warning) then rinse off. Then, I generously swab the rash with this blue-colored toner I got from Clean&Clear for sensitive skin. It has salicylic acid, which has the same derivation as aspirin. For some reason, this program has been able to give me up to four hours of itch relief. Better than anything else I ever tried on poison plant rashes. Also helps to be taking Advil, but I don't think that applies in your situation. I sincerely hope never to be stricken with the DH rash again, but if I am, I will give this a shot!

Its also possible you could be having other food sensitivities in addition to the gluten. I have gotten hives from salicylates, amines and tannins. Its worth looking into if you get no relief. Looking into the DH is also worth the trouble. Check out the salicylate sensitivity forum for more advice if DH is not enough of the answer.

Hello everyone. I am new to celiac and have only been on the gluten free diet for about a week. After about one or two days of being gluten free, my hives have gotten probably about ten times worse than they have been over the last year. Before learning about celiac I had an allergy test that showed me to be allergic to wheat but was later told to ignore that. I was told that it had nothing to do with my hives that I have had daily for more than a year. At that time, I stopped wheat for about a week and had the same reaction as I am having now that I have stopped gluten entirely. Is it normal to get worse before you start to get better? I am so miserable with these head to toe hives. I am itching so bad that I scratch myself until I bleed and still don't feel relief! If it is normal to get worse, how long does it usually take to subside??

Sounds like you need to see your Dermatologist, have a skin biopsy and a blood lab to see if you can take Dapsone.. Dapsone helped my itch...

Thanks everyone for the advice! I am fairly certain that this particular problem is not DH. I have had issues with that on my elbows and hands but the rest of this has got to be hives. I get them all over and they can seem to go away completely and never leave a mark other than the marks I leave from scratching like a maniac! Yesterday, it got so bad that I went to Med Express prompt care and they gave me a steroid shot. I had the best evening and nights sleep that I can remember for a while. My skin was so clear. I actually had relief! Then I wake up this morning with my arms, legs, feet, stomach, chest and part of my back simply covered in hives and itching out of my mind again. I can't seem to get decent medical care where I live and I am at my wits end! I don't know where to go from here. I will try the dermatologist again and see where that gets me and definitely look into salicylates. I think that it is strange that the only thing that I have changed is removing gluten from my diet and then this gets drastically worse. I could live with it before because it wasnt so bad or frequent as it is now. I managed for more than a year of it. This is so much more extreme and the fact that it happens after removing something from my diet is just baffling! Thanks again for the help! I appreciate having support!!

It may be that removing the gluten from your diet has allowed your immune system to focus on overreacting to something else, which is why the steroid shot helped. Steroids would not help with DH rash, but with a histamine-based reaction like hives they do. Since you've removed the gluten, now your immune system has more resources to concentrate on your hive reaction. Yay! Perhaps some investigation into the cause of the hives is in order? Mold in the house, other foods you're allergic to, animals in the house, a plant that's in your house giving off pollen.

This doesn't apply for everyone. Steroids were the only thing that helped my DH. Doctors would only let me take them once a year though and within a couple weeks of stopping them the rash was back.OP what kind of detergent do you use? If you are not already doing so you may want to go with something that is free of dyes and perfumes.

1

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45Blood tested and repeatedly negativeDiagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56Twin brother died as a result of autoimmune liver destruction at age 15

This doesn't apply for everyone. Steroids were the only thing that helped my DH. Doctors would only let me take them once a year though and within a couple weeks of stopping them the rash was back.OP what kind of detergent do you use? If you are not already doing so you may want to go with something that is free of dyes and perfumes.

Really? Perhaps it's not a widely used treatment because of the side effects of long term steroid usage, hence noone talking about using it, as most docs don't treat that way? Good to know! On the rare occasion I get glutened my rash is nowhere near severe enough for me to consider using steroids to treat, but other people may want to consider it. (The poison sumac on my chin & neck at present, on the other hand...!)

In that case, OP, it sounds even more like what you're suffering should start to get better and recede the longer you're on the gluten-free diet. When I got the rash once all over my belly and thighs, it helped to be wearing spandex pants. Don't ask me why! Maybe because there's no clothing movement against the rash.

Really? Perhaps it's not a widely used treatment because of the side effects of long term steroid usage, hence noone talking about using it, as most docs don't treat that way? Good to know! On the rare occasion I get glutened my rash is nowhere near severe enough for me to consider using steroids to treat, but other people may want to consider it. (The poison sumac on my chin & neck at present, on the other hand...!)

The side effects were why they would only give it to me once a year. In addition back then (almost 50 years ago ) my DH was diagnosed as 'poison ivy in my bloodstream'. I did get poison ivy once on top of the DH and boy was that pure misery. One of your previous posts reminded me of the way my Grandmother treated my Mom's DH which was also thought to be poison ivy. She would scrub my Mom down with a stiff bristled brush and then pour salt all over the lesions. A very, very painful experience from what I was told. My Mom used to threaten me with that treatment if she thought I was complaining to much about the itch.

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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying "I will try again tommorrow" (Mary Anne Radmacher)

celiac 49 years - Misdiagnosed for 45Blood tested and repeatedly negativeDiagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis All bold resoved or went into remission with proper diagnosis of Celiac November 2002 Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56Twin brother died as a result of autoimmune liver destruction at age 15

The side effects were why they would only give it to me once a year. In addition back then (almost 50 years ago ) my DH was diagnosed as 'poison ivy in my bloodstream'. I did get poison ivy once on top of the DH and boy was that pure misery. One of your previous posts reminded me of the way my Grandmother treated my Mom's DH which was also thought to be poison ivy. She would scrub my Mom down with a stiff bristled brush and then pour salt all over the lesions. A very, very painful experience from what I was told. My Mom used to threaten me with that treatment if she thought I was complaining to much about the itch.

This doesn't apply for everyone. Steroids were the only thing that helped my DH. Doctors would only let me take them once a year though and within a couple weeks of stopping them the rash was back.OP what kind of detergent do you use? If you are not already doing so you may want to go with something that is free of dyes and perfumes.

Thanks for your response! I am currently using All free so I am sure that is not the issue. I have had the hives for more than a year now so I have gone through eliminating so many of those types of things. Detergent, body wash, lotions, etc. I cant think of anything like that I have not tried so far. It is baffling!

It may be that removing the gluten from your diet has allowed your immune system to focus on overreacting to something else, which is why the steroid shot helped. Steroids would not help with DH rash, but with a histamine-based reaction like hives they do. Since you've removed the gluten, now your immune system has more resources to concentrate on your hive reaction. Yay! Perhaps some investigation into the cause of the hives is in order? Mold in the house, other foods you're allergic to, animals in the house, a plant that's in your house giving off pollen.

That has also been my theory. That removing the gluten has triggered this and my immune system is kicking in. The doctor is stunned that the shot wore off so fast. He said i should have had several days of relief instead of only 12 hours. I have taken oral steroids and anti-histamines off and on over the last year and haven't had any luck. The steroid shot I got yesterday was the only thing that has worked for me and that was very short lived. I talked to the doc again a few minutes ago and he wants me to go to the ER but I really don't see the point! I have been seen by so many different types of docs and no one seems to be able to figure this out or have any idea what to do. I have had extensive allergy testing and have such ridiculous amounts of allergies that are showing up that the allergists and my doctor don't even believe the tests. They feel like it must be something internal that is causing this, but like I said before, I just can't find any good quality care in my area. Even in trying to diagnose the celiac, the surgeon who was performing the endoscopy said that he doesn't believe in celiac and thinks that carbohydrates are the problem, not gluten!! What an idiot! He also biopsied my stomach and not the samll intestines. I don't know what to do anymore. Sorry to keep rambling on and whinning so much. I am just at the end of my rope here!

You don't have to get a formal diagnosis to go gluten-free. It's important to keep eating gluten until your testing is done, but after that you can start the gluten-free diet. Unless you are going to go to a different GI and get another endosocopy it might be better to start the diet. If you have DH (dermatits herpetiformis, skin version of celiac), you may need to avoid iodine for a while until the skin clears up.

This only comes to mind because I suffer from aquagenic priruitus, which is a condition that results in extreme itching caused by contact with water, but is it possible you are actually allergic to water. No, I'm not kidding, it is an actual condition in which physical contact with water causes... you guessed it, hives. Aquagenic urticaria is extremely rare, so it is unlikely but considering it is your whole body I wouldn't rule it out. I also use the same laundry detergent to prevent like a bazillion reactions to who knows what. (I haven't determined if it's fragrances or dyes and have no desire to go around testing it.)

For totally unrelated reasons (migrating pain) I find myself sometimes with literally no end in sight and no options for relief. My doctor has approved steroid use up to 4 times a year for me. I'm not sure if this is safe or not due to side effects, although some aren't as bad as they could be for me. (Not worried about reproductive side effects.) Sometimes when you're in enough pain or distress the side effects start to matter less, and if the itching is that bad you have to decide for yourself if it's time to say bring on the steroids and screw the consequences.

Oh, and on a final note I totally get itching bringing you to the end of your rope. My heart goes out to you. (My local Wal-Greens sells backscratchers. Just FYI. Wooden ones for a few bucks but some super scratchy awesome metal ones for a little more that are amazing! Could be worth checking out if you aren't super flexible.)